You Do Not See….

Guest post by Simon (Jonesy) Jones

My illness’ and disabilities are hidden. Most of the time when you see me you might look at me and think ‘he is not ill’ or ‘he is cheating the system’ or ‘he is a lazy bastard’. You know what on my good days, the only days you are likely to see me I perhaps would look in the mirror and agree.
What you do not see are the majority of my days where I may only move from bed to couch, if at all, where I have to almost crawl to the toilet, where I do not dare to bath or shower in case I get stuck. You do not see me fall off the toilet, you do not see me burn my food or leave the cooker on. You do not see me dehydrate not only because I cannot get up to make a drink but also because I am scared I will not have the energy to get to the toilet afterwards.
You do not see that I have a wheel chair, for on the days I need to use it I cannot because I have no energy to push myself along and will not because I have some twisted sense of dignity.
You do not see me awake all night because my skin cannot stand the rough touch of my duvet or the feel of the bobbling on a flannel sheet. Where cotton sheets feel like blunt razor blades cutting into me.
You do not see the mix of lava and ice that flows through my veins concurrently, making constant rivers of pain in my limbs and torso.
You do not see the ice that I am sure has developed throughout my feet and takes four hours to thaw out when I go to bed.
You do not see the fear I feel when people visit unannounced because of the shame I then feel at the mess because I have not been able to tidy up. Nor do you see the physical effort it takes for me to even answer the door or to make a cup of tea.
You do not see the constant thoughts of paranoia that someone will judge me to be a fraud on a good day so I then do not go out ‘just in case’.
You do not see the boredom or frustration at being in the house for days or even weeks on end due to my illness’ nor the feelings of being a prisoner.
You do not see the shame I have at claiming benefits after a lifetime of working, the anger at myself for being useless, for being pathetic and weak.
You do not see the horror of having to take meds each morning, the build up and reluctance.
You do not see the loss of value, self respect or hope I currently experience.
You do not see the breathlessness at the slightest effort, the worry of relationships because of the fear that health and meds mean I can no longer guarantee and erection. The inability to orgasm due to loss of feeling and the worry. The despair at my weight gain due to meds and inability to exercise. The way my penis looks because I had to have a circumcision due to diabetes. The bruising on my stomach and thighs because of injections.
You do not see my wheezing and panic because of my COPD and Asthma.
You do not see the nerve damage that causes pain and numbness in my feet, hands and legs due to Neuropathy.
You do not see the anxiety I feel each day that my money will be stopped or I wont be able to pay a bill.
You do not see the shame I feel when my ex wife calls me a cripple and tells me to limp off and die, claims my children see me as a joke (untrue as they do not) and tells me it is her and her new husband that are their real parents.
You do not see the anguish I feel facing people that were once friends.
You do not see my isolation, my loss of self.
You may see me on my crutches or with my stick. But you will not see the reason why.
You do not see my guilt of feeling like I do when so many are worse off and often fighting vile diseases for their very lives.
My illness’ are Fibromyalgia, Diabetes type two but insulin controlled), Neuropathy, Crohns disease, Asthma, Depression and Anxiety, COPD, SVT (heart) and several complications and side effects. I take meds that destroy my immune system so am susceptible to illness and virus.

The reason I have written this is to show how I cope or dont. Very few days go by where I do not think about just overdosing on my insulin. How easy it would be. There are times I have been a little blasé at regulating my doses but then I realise I am a parent and do not have that choice.
The Government are sanctioning people every day, stopping benefits and forcing them into poverty, desperation and yes suicide. Then the media, Channel 4, Channel 5, Sky and now the BBC in particular try to convince everyone that people that can walk, talk or that try to live rather than exist cannot be disabled. They try to get you to despise them. I can tell you I gave up a job earning very good money, a job that really made a difference in peoples lives, where I had self worth and value, I gave that up to live on benefits and be isolated in a council retirement bungalow at 49. Do you really believe that is through choice? Do you think I want to be ill? To feel useless and without any value? I am not saying I am without value but truly feel as such.
I am no worse off than others and much better than many. I do have my kids, and even though often a fractious relationship with other family I do have them.
I also have so many on here I call friend. But sadly far less locally. Those I do have I value beyond words and they know who they are.
So please when your judging people realise we judge ourselves far more, just because you do not see a disability or illness does not mean it is not there. I never expected to be like this. I have had to realise there is so much I wanted to do that I no longer can. Even simple things like walking on Bleaklow or Kinder again, using my push bike. Daft stuff. Things I took for granted.
So before you judge maybe ask, talk and discuss. I am not unique or special. My words fit many but even more peoples stories are far far worse.

Think about it.
Jonesy.

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7 comments

  1. Thank you.

    Liked by 1 person

  2. Liz Byrne · March 3

    Thank you for your honesty and for putting my life and feelings into words I couldn’t find. I haven’t even got the confidence to make friends on-line as I don’t think I have anything to contribute and hate a pity party as much as everyone else does. Good luck with it all

    Liked by 2 people

  3. Mark Catlin · March 4

    Reblogged this on Declaration Of Opinion and commented:
    Great post, know myself how lots of those thoughts/feelings go. I know many will read and feel the same. Thankyou for sharing. M

    Liked by 1 person

  4. Florence · March 4

    As one who also has hidden and more obvious disabilities thank you so much for this clear and unflinching description of these illnesses. I too have Crohns and UC, and inflammatory and osteo arthritis among other illnesses, I have friends with partial sight, another with heart failure. We can look “alright” on the occasions we venture out, loaded up with pain killers, having mentally booked the next week to recover. I have stopped using my wheelchair in public having been subjected to abuse, which then limits my ability to get out at all. These are the lives we live, in fear of being called a fraud, in fear of losing the little support won from the DWP after battles and appeals. Maintaining any form of friendship takes determination and great patience as offers of trips or outings or just to the shops are turned down because I’m just not well enough.

    Today I would love to be on the NHS demo, but despite a friend trying to organise me and my wheelchair, accommodation etc, was in the end too great a logistical nightmare. So we have to adapt to what we can no longer do, and it hurts. The social isolation can be the worst, but we must live on, we endure and make the most of all that does make us happy and whole. Once again thank you for being so brave to be able to put into words a little of the life of hidden disability, and I hope your good friends stay true, as they are so precious.

    Like

  5. Julie Stone · March 4

    It is so unfair that you and others have to put up not only with the pain and suffering of getting through every day life but then other people’s judgements considering you are not worthy of being supported by the state system. I send heartfelt best wishes that you will find the strength to continue you daily struggles and know that not everyone out there judges you in a negative way, with very best wishes, Julie

    Like

  6. Pingback: You Do Not See…. | kickingthecat

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